jen

jordan

I had migraine and some neuralgia symptoms before arriving at my medical school, but nothing even close to what this physical environment does to me.

Part of the issue is definitely related to the BARCO projection systems that they use, which do cycle red-green-blue……color banding from hell when I attempted to record a "lab" lectures with slides one day….

Computer screens definitely contribute to the eye strain, exhaustion, prime the painful left temple….etc. but being under the overhead LED's and blinded by the BARCO projectors puts me into a complete fight or flight response - documented by my Cardiologist as Inappropriate Sinus Tachycardia (a Dysautonomia cousin of POTS) triggered by the exposure to this environment.

All the lighting on campus physically hurts….my face throbs - specifically worse and more painful on left side - which is the side of my MVA impact, migraine, trigeminal neuralgia, cervicogenic pain/head and throughout upper back and throughout my face and skull…..all of which is consistent with your theory Jne - jen - of neuroinflammation in the trigeminal ganglion - left temple for me. It's definitely a key part of the mechanism of this torture.

I simply do not have the TIME nor bandwidth thanks to the constant pain I'm in, to jump into a reporting process that looks time-consuming and learning curve steep…..I'm a medical student trying to learn and pass tests so that eventually I'll be able to help others like me….

Ironically going to medical school has already been one of the most painful and stressful things I've ever done, due to the intense lack of support and active hostility towards me and my disability….

I suspect that we are all experiencing the effects of these photosensors that were discovered in the past 20 or so years: ipRGC's….

Trying to learn about these and use that as a class related project

https://link.springer.com/chapter/10.1007/112_2011_4

https://doi.org/10.1016/j.tins.2013.10.004

https://doi.org/10.1523/JNEUROSCI.4132-11.2011

https://doi.org/10.1177/0333102418784750

etc.

More as I'm able….back to school stuff and legal stuff - related to the ADA issues at school - for now.

I'm so grateful to have found you all.

          premedwidow I totally understand not having time, especially if it involves screens. As far as reporting goes, if you ever do have a little time, your experience could be very helpful to share with the FDA - they need our injury reports to know there's a problem and to justify starting to take action and hopefully eventually develop safety regulations. Each of us seems to have a somewhat unique story in terms of symptoms, even though there's also a lot of overlap among us, so I think it's important that the FDA hears from as many unique voices as possible, and your story is compelling.

          I've been trying to convince the FDA that their current reporting process is too hard for us and doesn't garner very useful information and have suggested they allow phone reporting, but no luck so far. Perhaps if you emailed them the link to this thread, that could suffice to share your symptoms and experience. Their official form is Accidental Radiation Occurrence form 3649 and you can basically say "see attached" for all of the non-useful specific questions and then attach your story. It can be sent in by snail mail or emailed to RadHealthCustomerService@fda.hhs.gov. The FDA Office of Radiological Health is probably our only hope for getting safety standards eventually. They'll also assign you a case number, which could be useful to reference in some of your other legal strategies. I've also spoken with them on the phone and know others have too after requesting this.

          I really hope you're able to obtain safe access to an education! It seems like we're in a limbo area since the wold assumes lights/screens are safe and can't possibly cause injury. We should have the right not to be forced to undergo injury that that create severe disability. If I haven't been injured by lights/sceens, I have no disability, so have no protection from harm in the current system. Even the medical system is excluding me from safe care.

          If you're researching the molecular biology that might underlie flicker sensitivity, iPRCGs are a candidate (I read a lot about them, but it's not totally convincing to me that they explain everything), but it's also possible that light-absorbing proteins or other molecules targeted in photobiomodulation therapy (not necessarily restricted to the known visual system) could also be targets - either ameliorating effects or triggering symptoms. Unfortunately, that field has been too sparsely explored to date to provide more than hints of possible targets, but they've found that the dose, wavelength of light, and whether/how the light is pulsed matters for creating biological responses. Minutes of light can trigger over a month of effects, suggesting signalling that could trigger changes in gene expression. That's consistent with how long I'm affected after an injury - often weeks to months. There's research on brief treatments with red and near-IR light being anti-inflammatory and helping to reduce mTBI symptoms. There are the most papers about this and the target proteins/pathways have been fairly well studied. There are different protein receptors that could be targets of blue or green light in photobiolodulation therapy in a family that includes touch and pain receptors, but this has very little study so far. I link to some reviews on photobiomodulation here. I wonder if the high near-IR/red light contributes to why I can tolerate incandescent light flicker much better than LED flicker. It's pure speculation, but I wonder if pulsed light might be triggering signalling from a touch/pain receptor in the brain that initiates an inflammatory response. My most common and persistent symptom is a feeling of pressure/swelling in my right temple. I also know from my testing that color-to-color flicker is a lot worse for me than flicker without sequential color change. I know sequential color flicker can be bad for people with epilepsy (like in the Pokemon cartoon incident in Japan), but I don't happen to know anything about the underlying molecular mechanism of that. A lot of LEDs seem to have sequential color flicker.

              jen You might be onto something with touch/pain. I turned off haptic and the constant ir light on my phone months ago as got the feeling that they kept amping up something. At one point I also bought an Apollo Neuro device and discovered just how much the senses / nervous system could be amplified from something as simple as just driving vibrations into some bone in the body. They got some studies on that. https://apolloneuro.com/pages/studies-roundup

              More than happy to discuss random theories in some thread. Went down the rabbit hole on photobiomodulaton, magic 40 hz flicker, the effect of red light on epilepsy, NMDAr / temporal acuity, mitochondrial issues, occular rivalry and too many other things this week. Just didn't have anywhere to rant about them. I feel like this could be solved even without new studies.

                Clinical Evidence of Nurosym?

                https://nurosym.com/pages/clinical-evidence

                Seems like their are a lot of vagus nerve modulation devices coming out these days.

                It seems to me that the pulsed aspect is crucial element as I have read about in the emf/emr arena (still talking about triggering energies and radiation). For example:

                Expanding Use of Pulsed Electromagnetic Field Therapies

                https://www.tandfonline.com/doi/abs/10.1080/15368370701580806

                Neurophysiological Effects of Flickering Light in Patients with Perceived Electrical Hypersensitivity

                https://journals.lww.com/joem/abstract/1997/01000/neurophysiological_effects_of_flickering_light_in.6.aspx

                Pulsed Electrical Stimulation of the Human Eye Enhances Retinal Vessel Reaction to Flickering Light

                https://www.frontiersin.org/articles/10.3389/fnhum.2019.00371/full

                Control of the Flickering Light Sensation Based on Superimposed Electromagnetic Fields

                https://ieeexplore.ieee.org/abstract/document/7112153

                jen Thought about your note on temple swelling. Could it be that it induces temporal arthritis, and that is the cause of the severity? In which case I would really look into that as there might be remedies to shorten the hits once it sets in as it is vascular.

                I actually had an experience here one day where I took Some Q10 after a long break, pretty rapidly afterwards got pretty heavy pain in my right temple, that went away rather fast along with my visual snow and text glow. Pretty weird experience. No idea if the pain altered some hemodynamics, or if it just forced things to shift to some other brain state. I would get that Q10 could improve things as it helps the mitochondria, but I can't really explain that pain. I've seen similar anecdotal reports from other with visual snow that it disapears after some severe pain.

                If symptoms reliably show up in the same spot it would be fairly trivial to check what is going on with EEG and MRI. Not necessarily that expensive even if it isn't covered by health insurance. Might be worth it if you can get a clearer picture on where something is happening so it is easier to dig thru studies.

                Even considered buying one of these home EEG devices and eye tracking with micro saccades to see if it is possible to get some better intuition about what happening.

                • jen replied to this.

                    This makes it seem like hospitals will adopt even more harmful LED lighting:

                    Transmitting patient’s health care information using LEDs in hospitals through VLC technology

                    https://link.springer.com/article/10.1007/s12596-023-01650-8

                    Full paper

                    VLC refers to visible light communications. They do mention the need to reduce flicker but I'm not sure their requirements will be safe:

                    The rapid and repetitive changes in brightness is termed as fickering. Flicker causes distraction. Becomes hazard to health when the area of retina exposed to flicker and also it causes headaches and even epileptic seizures [8]. The danger can be most catastrophic, when the flicker occurs at the frequency range of 3–70 Hz [8]. The offender for the flickering of LEDs caused by pulse width based digital dimming modulation drive circuitry. The vDSM, a pulse width based digital dimming modulation technique supports LEDs dimming without flickering as the dimming frequency is more than 300 Hz [9].

                    async If symptoms reliably show up in the same spot it would be fairly trivial to check what is going on with EEG and MRI.

                    Thanks so much for the ideas! The pressure is focused in my temple, but expands to include a larger area when LED injuries have been more severe, including inflammation closer to the eye and probably the ear too, as I can develop vestibular/balance impairment. Sometimes it expands to include pain in my jaw or along my cheek on the bad side. Brainfog/short-term memory impairment, insomnia, and nausea are common with LED injury for me. With enough time away from screens/LEDs, the symptoms all go away. I need to keep things at a level where symptoms are gone or extremely low with only a little head pressure, as debilitating brainfog starts next.

                    I've been checked out by many doctors in the past, but unfortunately don't have a safe way to do any further testing now that all of the medical facilities here have installed LEDs. 2 MRIs showed "no structural basis for headache" and an EEG was also normal. Unfortunately these were just normal MRIs, not fMRIs and I was fairly symptom-free during both of them since they have to be scheduled way in advance so I happened to be in a period of having avoided LEDs for long enough that my symptoms had subsided. I've asked, but doctors have said there isn't a system to do evaluations when I'm actually experiencing symptoms. Really annoying. A neuroopthalmologist has detected peripheral blindness on my bad side when I was exposed to the LED lights in his office (and then about a week of concussion-like symptoms), but it wasn't present on a later visit when the lights were kept off. My speculative theory is that maybe there was inflammation that created pressure on nerves in the visual system.

                    @"async"#p34507eye tracking with micro saccades
                    I know many people on this forum experience eyestrain, but I don't , with the exception of one day with especially intense head pressure/swelling that had expanded to create tightness around my eye that made it hard to move my eye from side-to-side. LEDs often trigger pain and initiate concussion-like symptoms for me even when my eyes are closed and/or I'm wearing a blackout sleep mask, so it doesn't seem like my eyes need to be doing any tracking for brain injury to occur.

                    I'm happy to chat more about theories via DM.

                      9 days later

                      please keep posting. this medical detail is helpful.

                      5 days later

                      jordan getting their special color filtered glasses stopped the sensitivity to glare, photophobia, and even some led sensitivity. Unfortunately didn't fix the screen issue for me

                      Really interesting experience with Irlen lenses:

                      They actually work on my M1 MacBook Air.

                      Prior to this, on other laptops like my otherwise perfectly usable 2012 Lenovo Yoga 13" (which I entirely disabled dithering on) or 2015 12" MacBook, putting my Irlen lenses on simply adds way more glare to those screens and makes me feel nausea, I have to take my lenses off when using those laptops because otherwise they suddenly start feeling unusable to me.

                      In addition, my lenses also don't work on my 2015 15" rMBP (AMD) which already is unusable and has really bad dithering, putting them on doesn't improve anything and makes me feel even worse looking at that computer, my Irlen lenses add an extreme amount of glare.

                      HOWEVER…

                      I'm having an ENTIRELY different experience wearing my Irlen lenses (color filter only, no perscription) while using my M1 MacBook Air + Stillcolor.

                      Unlike the other laptops, I do not feel ANY additional glare. My eyes are not twitching more when I have them on, in fact the movement of my eyes feels more stable. The lenses are actually WORKING and helping reduce strain even further. I feel like I can type way more without the screen going "double vision", and colors feel more relaxing.

                      I have no idea what makes the panel in this laptop respond entirely differently from other PC and Mac laptops but it feels like my Irlen lenses are actually "compatible" with my M1 Air.

                      Since my experience was already pretty good on my M1 Air's panel with the Stillcolor app, this makes it even better and I'm finally able to take advantage of the depth perception and expanded field of vision benefits I get while wearing Irlen lenses WHILE using my laptop.

                      -

                      As a side note, prior to this discovery, the only screens that were "compatible" with Irlen lenses for me were (surprisingly) OLED iPhones. Putting the info out there that Irlen lenses actually help a LOT with OLED, totally makes my iPhone 14 Pro look different, backgrounds look much less "noisy", and I get WAY less dizzy while using OLED if I have my lenses on.

                      I am pretty sure Irlen lenses work on OLED displays because they reduce PWM sensitivity, as they also consistently make rooms with flickering LED and flourescent lighting much more tolerable.

                      (Funnily enough, this means using my OLED iPhone with Irlen lenses — at least on iOS 16.4.1, LOL — is actually WAY more comfortable to me than using my terribly temporally dithered LCD iPhone SE 2 on iOS 17.2.1 no matter if my lenses are currently on or off. Although I have a much worse time using OLED without my lenses on though.)

                      -

                      However, this M1 MacBook Air is the first traditional LCD I've used that actually feels BETTER when I'm wearing Irlen lenses instead of introducing additional symptoms, which has totally surprised me. Feels so amazing to finally be able to simply keep my lenses on after opening my laptop.

                          DisplaysShouldNotBeTVs wow that's amazing I'm glad to hear the benefits on those devices! The glasses are designed to "calm" the brain and stops visual stress. My irlens diagnostician said that everyone is different so after using them for awhile it can help heal the brain from any past trauma (concussion for example) so you could get to a point where those added benefits are still there without the glasses after wearing them for awhile.. If not then you'll just only have them when wearing the glasses which is fine. I do also want to add that these glasses work with flourescent and led sensitivitys. I cannot walk into Costco without them lol. I think these could help a lot of people here!

                          Edit: what colors did you end up with on the lenses? You could always go back for further improvements by adding more colors too 🙂

                              jordan I do also want to add that these glasses work with flourescent and led sensitivitys.

                              Yup this is what they're most useful for for me, get a LOT less tired in buildings with flickering lightbulbs as long as I have them on.

                              I also have a second pair of lenses with a distance perscription and those are game-changing for non-indoors use in sunlight. The outdoors looks absolutely beautiful and more vivid then I've seen in YEARS — they entirely makes the outdoors feel like the 2000s again.

                              jordan you could get to a point where those added benefits are still there without the glasses after wearing them for awhile

                              Yep my depth perception has been getting better in general.

                              jordan Edit: what colors did you end up with on the lenses? You could always go back for further improvements by adding more colors too 🙂

                              Greenish yellow with 2 layers, not sure the exact values. However, trying to add an extra layer seemed to add too much glare.

                                      DisplaysShouldNotBeTVs I'm gonna go back and have my colors updated I haven't wore mine in awhile. For me they took away OCD/ADHD like symptoms and especially anxiety!! I first had aqua blue and then switched to aqua blue + double purple. I never have wore them with my Xiaomi 13t amoled screen so I think it'll be worth to revisit them and see if it helps the "text jumping at me" feeling. I'm so happy they are working for you !!

                                          jordan BTW, one of the things that made my Irlen lenses feel even better — especially my distance ones but it improved both — was adjusting my glasses to be positioned higher up (which allows buildings/etc. that are really up high to be in my default field of vision looking straight instead of needing to look up). I did this by adding thicker soft nose pad covers on top of the existing metal nose pads and twisting them both in a way that slightly pushes up the glasses and pushes them a bit further away from my face too.

                                          Now I can have my head completely straight while walking, I feel like I don't have to look all over the place as much, and it seems to align my vision in a way where I can see details in the real world that I swear the last time I remember being able to see was over 10 years ago.

                                          For example, after adjusting them up I have started to see "extremely intense patterns of information-dense and repeating information" in the real world as well such as "multiple street lights/windows/holes/tiles all in focus the same time" which is SUCH a great feeling. (This feels very similar to the level of information density I can also percieve on "good screens" after temporal dithering is turned off etc.)

                                              DisplaysShouldNotBeTVs
                                              That's actually something I noticed too! It almost seems without them I have to scan my eyes around to see/find something. When I would wear them I can just notice things right away and it seemed to improve my memory tbh. I'll have to go back and get my colors updated! I think my best pair was the aqua blue only pair. I think frames with bigger lenses could be wonderful. So for your up close/computer pair it's just the color filter without corrections right ?

                                              Btw they do offer filtering for hard contacts too btw.

                                              Edit: also to those reading these messages, everyone is different so even though blue is good for me and the other color is good for him.. you might still benefit from another color like pink or rose colored for example, never know until you get screened.

                                                DisplaysShouldNotBeTVs I tried a few lenses at the optician, as well as some sunglasses, and yellow makes natural whites insanely intense for me. Probably because they activate both types of receptors. With yellow lenses I get the same feel like I do when I've pushed things far enough for all visual symptoms to appear, where for example looking at white snow is extremely painful and the whiteness seems out of this world. Didn't experiment much with colored glasses and screens tho. Just remember that I used contacts with a slight green tint (Acuvue Oasys Max) before things went to shit as well.

                                                I've seen some reports that there are differences in polarization on the different RGB pixels on some screens, so you could try experimenting with some polarized lens and rotating them to see if that brings some clarity into what the difference is. And spectrometer would be interesting, but those are horribly expensive.

                                                And as far as I can understand, do remember that RGB screens can't for example output the wavelength for yellow, as it will simply trick our brain by blasting combinations that are interpreted as yellow. Apart from the backlight where there a wider spectrum, but probably super heavy in blue.

                                                So with a natural yellow you would have a wavelength that by itself activates both types of receptors, while with the machine one you would have two wavelengths that are imitating yellow.

                                                Also these glasses doesn't change the wavelengths in any way, and simply blocks specific ones. I would guess that a pure blue (yellow blocking) would block natural yellow, but that the one from a computer screen would pass right thru.

                                                Took some quick pics to compare how polarization affects M1 max vs Mateview 28".

                                                    jordan talked quite a bit with support at Huawei. It's 8. Currently testing 6 bit on that image. I have 3 of them and 2 are shit. Tbh i don't know why, and I barely use it.

                                                        async jeez that's a shame. False/tricky advertisment for Sure

                                                          async yellow makes natural whites insanely intense for me

                                                          yellow of normal color tinted lenses is very different from irlen yellow which very precisely filters light spectrum and there's like 9 different variations of irlen yellow my specialist had me try that honestly all of them made me feel entirely different from the next lol

                                                          also irlen greenish+yellow on mine is not strong yellow it all, it kinda looks like night shift was turned on halfway and then a slight green is added to it perceptually

                                                          in the past i had more "standard" color tinted blue light blocking on my prescription glasses that actually looked very perceptually similar, but it didn't have any of the really really noticeable depth processing, movement coordination, and flicker sensitivity reduction benefits of my irlen custom tinted lenses

                                                          total difference in how they are made and what they're actually doing with light vs. just regular color tints that probably distort light spectrum in a much less consistent way

                                                          with standard blue blocking lenses i never felt much of a difference from regular vision other than "some colors look more vivid" and "things are a bit more relaxing"

                                                          with very perceptually similar irlen lenses — even coming from the standpoint of honestly not really believing the hype at first — the moment i went outside with my specialist halfway through the selection process it was an absolute "oh my god i have not seen the world look quite this way in 15 years i didn't know things are supposed to look this 3D and this large all in my field of vision at once" moment

                                                          i really didn't believe at first that this would even be possible through purely a "really well calibrated color filter", but somehow it is and i was seeing the proof firsthand right in front of me

                                                          finally, only irlen custom tinted lenses have actually significantly affected the feel and improved the comfort of OLED iPhones for me, no other glasses or color filters have ever done that for me

                                                          by the way, irlen custom tinted lenses >>>>>>>>> neurolens. irlen is so much better, source: tried both

                                                          don't expect screen improvements with them though aside from OLED phones (because they really help with PWM sensitivity, they actually make my iPhone 14 Pro usable) and really surprisingly the M1 MacBook Air that actually does improve while wearing irlen lenses

                                                          a lot of the benefits are more for rooms with flickering lightbulbs, HUGE improvement in depth perception in the real world, staying coordinated in large crowds, outdoors looks and feels awesome, bright sunlight isn't tiring anymore even though sunlight still appears "perceptually" just as bright with them on —

                                                          not so much laptop screens and monitors though. if a screen dithers it will still suck with irlen lenses. if a screen PWMs it can be improved, but might have significantly more glare which can sometimes end up being worse than whatever it improves

                                                          but, i still have no idea why, the one screen it DOES improve is the M1 MacBook Air, i don't feel ANY additional glare and it's more comfortable with my lenses on (on the other hand, no other Mac or Windows laptop i own is improved with irlen lenses for me, even others with succesfuly disabled dithering)

                                                            dev